Recent Posts

Pages: [1] 2 3 ... 10
1
MISCELLANEOUS / Upcoming neuro appointment
« Last post by agate on Today at 09:05:41 pm »
Time for a blogpost even though this isn't a blog.


I have a routine neuro appointment coming up, and I'll be telling the neuro about the nystagmus episode I had last October, a couple of hours after getting the super-strength flu shot.


I hadn't had nystagmus so severely since the late 1970s or so, and it was just as frightening and show-stopping this time as it was then. When your eyes are whirling around in your head, you can "see" colors and shapes but they make no sense. They are totally meaningless. You are suddenly blinded, in other words.


This used to happen to me when I was walking around. I never was troubled much by it since getting the wheelchair. I had only a few such episodes but with each one I had to stop in my tracks and grope my way to a wall or column, a vertical surface against which I could lean and immobilize myself totally, resting my head against that surface, and wait for my eyes to calm down. After a while--maybe half an hour?--they obligingly did settle down.


This time, though, I was in my wheelchair and had been in it all morning. I had had to make some sharp turns, both while in a van riding home from that flu shot and then on entering the building. It may have been the turns that triggered the problem. In the past turning up and down the aisles of a supermarket used to bring on less severe episodes of the same problem.


So I'll be telling the neuro about this. She probably won't regard it as an exacerbation since it didn't last the required 24 hours. It lasted only about an hour.


I'm hoping she won't decide that the Glatopa caused it.


However, maybe Glatopa needs to be reconsidered. I misremembered why I stopped taking Copaxone (another version of glatiramer acetate = Glatopa) years ago. I refreshed my memory today by looking up my record.


I stopped taking it because of "bowel urgency." I have been troubled by "bowel urgency" again in recent months--but had forgotten that I'd had it before and associated it with the glatiramer shots. 


"Bowel urgency" means the occasional loss of control. It means frequent trips to the bathroom, sometimes 10 times in a day. I can cope with this on days when I'm home alone with nothing much to do but not every day is like that, and furthermore, all of those bathroom sessions can leave a person very sore.


I looked up Glatopa today and found that, yes indeed, "bowel urgency" is listed as a possible adverse reaction to it.


So I may be giving it up soon. Tomorrow I will see what the neuro has to say.  She wasn't entirely on board with my resuming it in the first place.
2
MS - RESEARCH AND NEWS / Christina Applegate and MS podcast
« Last post by agate on March 16, 2024, 09:39:46 pm »
 Christina Applegate, known to many in her TV roles,  diagnosed with MS, is teaming up with Jamie-Lynn Sigler, who also has MS and who had a role in "Sopranos," for a podcast called MeSsy.  I have no knowledge of either Applegate or Sigler and so can't recommend the podcast but it's interesting and probably helpful if more celebrities are calling attention to MS, a disorder so many people don't understand.


From HuffPost (March 14, 2024):



https://www.huffpost.com/entry/christina-applegate-multiple-sclerosis-symptoms_n_65f320efe4b09953f2f9276f
3
More on falls. This Canadian study found


Quote
Falls were not related to rural residence or age, but those with memory impairment, multiple sclerosis, as well as other chronic conditions such as mood disorder, anxiety disorder, and hyperthyroidism not often thought to be associated with falls, were also more likely to fall.






From PubMed (March 15, 2024)--"Comparison across age groups of causes, circumstances, and consequences of falls among individuals living in Canada:  A cross-sectional analysis  of participants aged 45 to 85 from the Canadian Longitudinal Study on Aging":


https://pubmed.ncbi.nlm.nih.gov/38483932/
4
From Need-to-Know Papers (March 11, 2024)--"The prevalence and topography of spinal cord demyelination in multiple sclerosis:  A retrospective study":


https://bit.ly/3TcKhOK
5
More on frexalimab in MedPage Today (February 14, 2024)--"Novel Anti-CD40L Antibody Slows New Brain Lesions in Relapsing MS":


https://bit.ly/3wQyj62
6
From PubMed (March 12, 2024)--"A nationwide update on prevalence of falls, injurious falls, concerns about falling, and fall prevention in persons with multiple sclerosis":


https://pubmed.ncbi.nlm.nih.gov/38466198/
7
COPAXONE (glatiramer acetate) / US FDA declines to approve GA Depot (yet)
« Last post by agate on March 12, 2024, 09:58:17 am »
The US FDA has declined to approve GA Depot. Apparently more information is needed, and this may be just a matter of a delay.


From Neurology Live (March 22, 2024)--"FDA Issues Complete Response Letter for Long-Acting Form of Glatiramer Acetate for Relapsing Multiple Sclerosis":


https://bit.ly/48QUXIA



8
From MedPage Today (March 4, 2024)--"Cognitive decline in MS predicted by paramagnetic rim lesions":


https://bit.ly/3Tc0LGT
9

In the early years my MS involved quite a number of very alarming vision problems, diagnosed as optic neuritis, central scotoma, nystagmus, and a severely abnormal visual evoked potentials exam. Since then most of these problems have gone into hiding although a return of the nystagmus recently reminded me that they are still lurking there. Ophthalmologists haven't been especially interested in pursuing my "ocular manifestations of MS" and perhaps that is just as well, as there doesn't seem to be much that can be done about MS vision problems.  This study by researchers at Mayo Clinic repeats what has been noted from time to time in the past: that these problems exist.


There is one slightly encouraging statement:


"Optic neuritis was mostly unilateral (40/43, 93%), with 16% (6/43) having a visual acuity of 20/200 or worse at nadir but ultimately 95% (35/37) improving to a visual acuity of 20/40 or better."

So, yes, if you have optic neuritis, you have a 95% chance of getting back to a visual acuity of 20/40 or better once the optic neuritis subsides.





From PubMed (March 9, 2024)--"Ocular manifestations of multiple sclerosis: A population-based study":

https://pubmed.ncbi.nlm.nih.gov/38457238/
10
MISCELLANEOUS / Timely topic: The political debate around daylight saving time
« Last post by agate on March 09, 2024, 09:24:20 pm »

This weekend is unpopular with some people, including me. I dislike losing an hour. I dislike having to reset things and rearrange plans.  I'm in a state where there has been an attempt to put the state on permanent standard time but that didn't succeed. Maybe some day it will.

From NPR (March 8, 2024)--"What to Know about the Political Debate around Daylight Saving Time":


https://www.npr.org/2024/03/08/1235811935/daylight-saving-time-change-2024
Pages: [1] 2 3 ... 10